No periods doctor won't help

[PCOShell]

Hi,

My DH & I are TTC and I have PCOS. I have been to the doctors and they've done 3 sets of blood tests and nothing has come back and have apparently sent a referral to the fertility clinic but I have no idea how long that will take.

It's seriously affecting my mental health. I haven't had a period for 5 months and the GP are just being completely unhelpful. I've never actually had an appointment with a doctor. They just do a 2 minute phone call then send me in to get bloods taken. Then they say my hormone levels are too low and I need to get bloods on a certain day of my cycle which is impossible.

What can I do? I'm willing to pay to go privately but don't know where to start. If I take out health insurance will it cover fertility treatment? I haven't had any appts yet so don't think they can class it as pre-existing.

I've heard of clomid, can I ask the GP to prescribe it?

I've posted in the correct topics before and had no response so apologies for posting here. It's really starting to make me hate myself. My DH is great and doesn't apply any pressure but I know he's desperate for children and I feel like there's something wrong with me.

But what will a face to face appointment with a GP achieve here that a phone appointment won't? GPs are not experts in PCOS, sounds like they've done all the tests they can so further appointments won't be a productive use of time. It's frustrating when your body isn't behaving as it should but unfortunately there isn't a quick fix they can give you.

How old are you? I would go straight to a private fertility clinic if you are running out of time. You will be taken seriously and actually some direction about your fertility journey.

I'm sorry you're in this situation, time seems to go so slowly when you are ttc.

I second the Taking Charge of your Fertility book. It really helps you notice the little clues that might mean you are about to ovulate. I had clomid, but it was having no effect until I started acupuncture with a fertility specialist. Whether it was just relaxing or actually did something, who knows? I do recommend it though, and I believe there is evidence to show acupuncture can help regulate hormones.

I think this is what I'm going to do tomorrow morning. Luckily I'm late 20s so not running out of time but the feeling of not being taken seriously is really hurtful

Thank you I shall definitely order this book. I had no idea accupuncture could help so will have a look into that too!

I'm sorry you feel like you aren't being taken seriously, but I don't think there is anything the doctor could do that would make you feel that. You have been taken seriously enought to have multiple bloods done and referred. Long waiting lists are really really frustrating.

I have PCOS and both times I was conceiving I had to wait until I had been TTC for 12 months.

At that point I was able to get a referral to the gynaecology dept at the local hospital and there I was prescribed clomid.

It worked both times.

However I still had to wait 12 months on NHS. You could pay privately.

Sorry not a lot to add but I would strongly advise against consulting a nutritionist, I know far too many who have few, if any qualifications. Dieticians, however have to be certified and are qualified to at least degree level.

@PCOShell like you I had my blood tests done which indicated PCOS so was referred to a fertility specialist on the NHS, that was over a year ago and still waiting sadly. We did find that my husband could get a sperm analysis done through the NHS and it took him less than 2 months from GP referral to getting results. Reason for doing that was so we can officially cross him off the list of possibilities before we approach privately as then we don't need to pay to have him checked as well.

Now we're looking at where to go privately to hopefully get me prescribed something to kick my eggs into action, as we know he's got no issues!

not sure if it’s been mentioned yet but inositol is good for pcos , it’s readily available online and there isn’t much in the way of nasty side affects some of the prescribed ovulation drugs such as clomid or letrozole can have plus you will only receive those if you are not ovulating You might find inositol does what you need whilst you wait for your referral Good luck 🤞🏻

Sorry not a lot to add but I would strongly advise against consulting a nutritionist, I know far too many who have few, if any qualifications. Dieticians, however have to be certified and are qualified to at least degree level

Totally agree with this. Unfortunately anyone can call themselves a Nutritionist.

Unfortunately there is nothing more a GP can do. They know you have PCOS and are not ovulating. Only the fertility clinic can offer higher level assessment (eg hycosy, semen analysis) and intervention (letrozole, clomid, IVF).

In most healthboards the GP cannot refer to the fertility clinic until you have been trying a year, when it's clear you have a condition impacting on fertility. It's often two years if there is no obvious cause for not conceiving.

I do know it's frustrating and saddening - I've been trying to conceive for 2 years. Your best bet is to call the fertility clinic and check 1) that they have your referral and 2) the approx wait time.

Sincerely the only thing your GP could do is prescribe progesterone or norethisterone to induce a period, but that wouldn't induce ovulation so it's not very useful for you.

Agree with @Loulou2202 that inositol is good - our fertility clinic recommended it.

Re:side effects: letrozole is low effect (now first line for PCOS), clomid has quite a few.

Also meant to add - private clinics will cost about 1k per cycle for letrozole

OP I am the same as you, however I'm going to tentatively say that I started taking Nourished vitamins that they tailored to my pcos, and after taking them for 6 weeks my periods seem to have started again. You have to do a short questionnaire online and they make a vitamin 'stack' tailored to your answers.

I don't think it can be a coincidence as I'd had massive problems with periods being every 5 months or so for over 10 years. However I haven't conceived and it's only been regular for 3 cycles so far (cycle now beeing 5/6 weeks). So while it looks positive it's too soon to say it's definitely

With all due respect, what are you expecting the gp to do? They’re referred you to the fertility clinic, so have taken the correct course of action. Maybe worth contacting the fertility clinic directly, to chase your appointment.

I'd also anecdotally recommend inositol!

Once I started taking that along with my pre-conception vitamin I went down to regular 44 day cycles, I know it's technically on the longer side of normal but way better than 100+ days I was before 😀

I was told the ovulation test strips can be hit and miss for people with PCOS so just take my temp every morning, I still don't seem to release eggs yet though.

Agnus Casta was great for me. When I came off the pill I had an initial bleed but then nothing. It got to 70 days so I started taking it after Google researching and within 2 weeks I had a period. I took it for about a month after that and my next cycle was 37 days and then about 35 and then I fell pregnant.

I am not sure what you think the GP can do face to face that they haven't done on the phone. You have a referral and they did bloods, you have a diagnosis of PCOS so a scan wouldn't yield much more info either.

When I was TTC, the GP couldn't prescribe clomid as it needs scans to monitor follicle growth so they can then tell you when to have sex at the best time for ovulation. And to ensure you don't over respond and end up with too many follicles.

Find your CCGs fertility treatment policy too as it will outline restrictions to treatment and what they fund regards IVF too.

The referrals take an age, but so does treatment too. I did clomid then waiting for IVF and it was over a year from my first appointment until we started IVF, and probably more like 18 months from when the Dr referred us.

@PCOShell Sorry! I probably was being a bit sensitive, for me it was a small quick operation that worked like magic. Best of luck, you have lots of time. I was 37 when I had the op!

Clomid is no longer the preferred ovulation induction drug for PCOS. Letrozole is more effective and fewer long term side effects. I understand that GPs cannot prescribe letrozole though, which is why clomid remains popular.

I have PCOS and conceived DD on 3rd cycle of letrozole. I had full monitoring and i had to up my dose a couple of times. I have also been taking metformin for 2yrs to help in our TTC journey (and am back on it now in preparation for baby #2).

If you have been referred to the fertility clinic, then that is a great start. You can of course pay to go privately - ovulation induction + monitoring is MUCH cheaper than ivf. I think we found for around £2k max including all initial consultant appts? But our NHS referral came through before we needed to go private. You can find which clinics are best in your local area on Google or ask on here. Some hospitals also offer private services as well as NHS. Health insurance doesn't usually cover fertility treatments. The fertility clinic will also want to do bloods, scans, and test your DP sperm before you start any treatment. I think it took us 2 months from first appt to starting the drugs.

We had the same thing. Came off the pill and no period to be seen for months. Was referred to the fertility clinic where they did lots of tests and scans to try and find out why. Tried clomid for 6 months. That didn’t work. Was then referred on for ivf. We eventually did have children but it was a long hard road getting there.

Coincidentally, Dr Aviva Romm just posted this up on her Instagram.

avivaromm.com/pcos-natural-prescription/#4-the-natural-pcos-prescription

Thank you everyone I have read all of your suggestions and I'm looking into every single one of them!

Called this morning and they said the NHS has a 10-12 month backlog so I've paid for the consultation and it's being done next week! Happy I'm being seen but feel so upset that this is the state of our NHS these days :( lately it seems anyone who actually wants anything done, has to pay for it.

Things will likely move much faster now you're under the care of the FC. I found my GP to be quite woeful when it came to fertility but the clinic were fab and we made progress quite quickly. Best of luck OP, struggling while TTC is a massive slog.

I know this is a long massive struggle @PCOShell - my cycles pre letrozole were up to 161 days between periods (and not ovulating at all so no chance to conceive) and it just feels so hopeless doesn't it?

On letrozole now and it's still not quite working as it should but at least there is movement. Prepare for more waits though - we have just had a consultant appt to discuss IVF postponed for 3 months!